The Unexpected Gifts of Lewy

My father is thoroughly enjoying his lunch. Bite after bite, he raises the fork from the plate to his mouth, chewing every bit of food before swallowing. He doesn’t pause too long between bites because he is hungry. I watch him take another piece and blow on it gently, cooling it down before putting it into his mouth. When I ask him how his meal is, he says something in a barely audible voice, then very clearly says, “Just like my father.” Then he turns to me with the most luminous smile that I may have ever seen on his face; clearly, he is having a happy memory of his father.
I watch closely as he continues to eat. I wish I could share in the joy he is getting from this meal. I wish I could smell the wonderful feast before him. I wish I could see the food. But I cannot do any of these things because all of it – the plate, the fork, the food – is a hallucination. As an entire meal, one that is real, sits untouched on the table before him, my dad continues to eat the feast that only he can see. I know that tomorrow he may be back to eating his normal meal. But for right now, I can’t help but feel my heart break watching the man who so loved to eat consume nothing but air.
My father has Lewy Body Dementia and, like all forms of dementia, it has taken so much from him. His memory, cognition, ability to walk, fine motor skills – all are being systematically diminished as his family watches helplessly.
But Lewy has brought with it some unexpected gifts. As my dad became increasingly delusional, his thoughts initially frightened me. On one occasion, he motioned for me to come closer to him. Then he whispered to me, “Your mother is running a whorehouse.” My father said this with great seriousness, as if he was telling me a secret formula for curing the common cold or where I could locate hidden treasure. I attempted to arrange my face and body language such that it did not reveal the two strongly conflicting yet equally powerful emotions raging within me. One side of me was struck with an overwhelming desire to throw myself onto the floor and roll around in great fits of giggles as I pictured my stern German mother residing over a bevy of call girls, while the other side felt tremendous waves of tears rising because my logical, straight-arrow, hard-working dad was not trying to make a joke. He was completely serious. This whole conversation began because my dad was afraid of the men who were coming to the nursing home to kill him due to my mother’s “business” troubles. I put on my serious face and leaned in closer to him. “You didn’t know, did you?” he said. “No,” I whispered. Oh, but there are so many things I didn’t know before Lewy entered our lives. Among the things I did not know? My dad is in the CIA. He is engaged to an African king’s five-year-old daughter. My uncle is growing vegetables to sell to Mexico. My father owes $30,000 in child support for a son he fathered last year (when he was 86). My husband Bill has a cabin in the Adirondacks and is raising chickens. These were not rational thoughts. They were not the thoughts of the reasonable father that I knew. Whose thoughts were they?
Then I realized the vivid imagination these thoughts were revealing to me. No longer confined by the societal and cultural norms to which he had been adhering, my father’s thoughts were at last allowed to wander into darkened corners of his mind that had remained unexplored until Lewy shined a light into them. Inhibitions gone, filters off, my father’s mind was finally free.
My father’s contentment with his life has also been brought into focus. I hear no regret in his voice. No sadness in our conversations. There seems to be nothing lacking in his life. One day he looked up at me and said, “I’ve had a good life.” This man who left war-ravaged Germany in 1954 with a wife and five-month-old baby to sail for the ten-day voyage to America is content with the life he built for his American family. The only thing he consistently yearns for is a simple hamburger.
Lewy has also had a profound effect on me. I guess that is to be expected. With each new symptom that arises, each tiny change in my dad’s character, I feel as if Lewy is holding a chisel to my heart and tapping away, creating newer, deeper cracks. Initially, all these chasms did was allow tears to escape. Huge rivers spewed forth as I grieved for the bits of my father’s personality that were slowly dying. Then a shift occurred. I realized that these painful perforations in my once closed-up heart were allowing love in – and out. It was as if I suddenly had a conduit to feelings I had never allowed myself to access before. Of all the times in my life to be strong and withhold my emotions, which I do so well, this is not the time. If these feelings need to wash over me as rivers of tears, I shall allow it; my dad deserves nothing less. That’s letting love in. I also allow love out. This wonderful man who taught me to shoot a .22 when I was thirteen, who gave me away to the man I love at 29, who was always firm yet kind, who taught me respect and hard work and loyalty, is the one who needs me now, and I will spend every precious second I can with him, being fully present and surrounding him with the comfort that he will never be alone.
Lewy Body Dementia will continue its pernicious dance in my father’s brain, taking away parts of him as I watch helplessly. But Lewy has given me a glimpse into an imagination I never knew existed in him. It has shown me what contentment looks like. And it has given me a wide-open heart with which to love my father through it all. I don’t know what Lewy has planned next, but I know that I will be there during every step of my father’s journey, sitting beside him, breathing in his strong, gentle soul. His memory will continue to fade, but my love will never diminish.